Anyone have Cutaneous T Cell Lymphoma?

Thanks for the additional information. I have been doing light treatment for about 18 months but have wondered about melanoma or basal cell cancer. I do see my dermatologist frequently and he does a thorough skin check every visit (and usually finds something to biopsy) but it is an ongoing fear. I live in an extremely dry climate and my skin is so flaky and dry. I use so much cream and not anything cheap. I am unsure if it actually helps. I am fortunate I was diagnosed early - stage 1A

After I was diagnosed with Cutaneous T Cell Lymphoma, Mycosis Fungoides in November 2022, my dermatologist sent me to an oncologist who prescribed the light treatments. I developed a melanoma, so they were suspended. Then I had potilegio by infusion for over a year. I received this until it no longer seemed to control my skin issues. I just started Bexarotene capsules. My understanding from the prescribing pharmacy is that it could take around 4 months to see progress with my skin. In the meantime, the flaky skin condition is on my face and neck, particularly around my eye. Steroid creams cannot be used in those areas. Time will tell. I use moisturizers, but the flakiness continuously reoccurs. Fortunately, it doesn’t itch.

My dermatologist tried for two years to diagnose a rash on my thighs that got progressively worse over time. She did several biopsies over that period. I’m not sure of the exact details, but she finally had the biopsies examined by a radiologist who specializes in blood diseases. I was diagnosed with Cutaneous T Cell lymphoma, Mycosis fungoides. She referred me to an oncologist who is also a hematologist. This is not curable, but can be treated.

I have a National Biological UV light in my home and I use it 3 times a week. It is supposed to be life long treatment so it is great to have it in my home. If I went to a dermatologist office it would cost $40 a visit. Long vacations are a bit complicated but it is so helpful to have the equipment available. It does however sit in my living room. Nice to have an easy to use equipment at home.

I was able to get a Daavlin narrowband UVB light box. It is about 6 feet tall and has 8 lights. The unit folds up nicely. It has saved me a lot of time. I have done about 35 treatments, about three times per week. Started with a low dosage and gradually increased the exposure.

Welcome to Connect, @58skywagon. Thanks for sharing your positive news about the treatments you’ve used for your CTCL. It can take some sleuthing to get the right diagnosis and then again, for treatment options! Sounds like you have a great combination between the Clobetasol cream and the light treatments. Do you have a light box at home or did that require trips to a clinic?

I was diagnosed with CTCL in October of 2022. The diagnosis was finally done after a couple of years of having a rash on my back. I was seen by Mayo Clinic and was given a prescription of Clobetasol .05% cream. I also acquired a narrowband UVB light box. Between the cream and the light treatment the rash is under control. I did about 35 treatments of the light and am now taking a break. Still using the cream on a daily basis.

i sent a reply in earlier on another thread on my CTCL treatment process. it went from a few small white dots on my thigh, to a palm-sized patch a few months into getting it checked by dermatologist. once a biopsy was made, the mycosis fungiodes diagnoses was confirmed. we treated for 6 weeks with Valchlor and then I started using Clobetasol 0.05% ointment and a home UV light on new and existing patch. Now the CTCL is in blood (12.5% cancerous T-cells) so we are using Targretin pills 300mg/day and bloodwork monthly.

In mid-2022 I noticed 3-4 small dime to quarter size white patches developing on my thigh. A co-worker immediately advised, "go see a dermatologist". In Nov 2022, a dermatologist looked at my spots. At first it was treated as ring-worm. This was a wrong diagnosis. A biopsy shave was done in Jan 2023 and this revealed mycosis fungiodes CTCL type cancer. We started a chemotherapy by gel (Valchlor) in Feb/March 2023. By April 2023, I had gotten an infection in the wound site (I am a biologist deep in the water last season), so I discontinued the Valchlor after 6 weeks. A few months after leaving Valchlor, more spots appeared (dime size) in new areas on my legs and forearms. Now I am using Targretin as a blood test revealed the CTCL in bloodstream. One month in with the 300mg/day of Targretin. All work done at Scripps in San Diego.

I was diagnosed with CTCL in March 2023. We started treating with Valchlor gel (special order/cold storage) and then moved onto Clobetasol 0.05% and I used a at-home UV light daily for 1-2 minutes on the white patches. Now, the CTCL has moved to my blood and am taking 4x75mg Bexarotone (Targretin; a chemo pill) for a total of 300mg a day plus 2 pills to manage hypothyroidism and triglycerides. a long slog so far, with one huge patch (the size of my palm) which Valchlor did a good job at attacking.